An open letter to those who know somebody and those who live with Irritable Bowel Syndrome (IBS.)

[Meg8103]

There is no cure, it is something that we have to learn to live with. We have to learn how to manage the pain, the triggers and what to do with a flare up. It is totally down to trail and error, and that is so frustrating. It affects every day life. I can’t remember the last time i went out, or even felt normal.

It affects everything from physical symptoms to psychological symptoms. It literally messes with your head.

I wish IBS was more understood by employers and doctors. Stress triggers IBS and this is one of my big triggers. I started a new job just over 7 months ago now and i’ve been on sick a lot. They’re following their HR procedures which i totally get but they just don’t seem to understand the impact on daily life that IBS has.

Doctors tell you ‘Its just IBS.’ As if thats meant to be a good thing and you’re not actually in pain. Typically I get cramps in both sides of my lower abdomen on a daily basis and bloating along side unpredictable bowel habits (lol.) On bad days, it can vary i get really bad pins and needles in the lower left ribs, I feel extremely nauseous and sometimes vomit, i have extreme bloating to the point that my clothes do not fit and its uncomfortable to walk. More recently during this flare up it had got to the point where started wearing incontinance pants : I am 22 years old this is not normal.

It affects you psychologically. From being worried about not being able to make it to the loo whilst you’re outside of the house, to the stress that you put on yourself when you miss things like work or social events.

Over the past two months I have missed my best friends engagement party, the Take That Tour, celebrating my birthday, going to Birmingham, going out for tea with the girls and ALOT of work. I have been told by HR that if I continue to be unreliable then i will have to go to a panel meeting to see if i can stay in my employment. It feels like people either think you want to be ill or that you’re just being dramatic.

Please just take from this that your friends, family, employees, bosses and patients, just want support, for you to not feel as though we are useless (We think that of ourselves enough) and to try and understand.

Many thanks

Meg x

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[Champagne_supernova]

I totally understand what you're talking about. I've had it for 3/4 years and only recently has it come under control.

I've had to turn down social engagements to the point that people think that I'm being rude. I do enjoy going out and socializing, but I'm in so much pain and worrying where the nearest bathroom is that I just can't do it.

I'm living in hope that my IBS stays under control and I hope that yours improves too, all the best, John.

[AmandaJW]

Can relate 100% especially about work, like you I have had to have so many days off, some months I haven't even put in a full week and then I had to go on half days. I had to turn down every social event connected to work and I was felt I was missing out on so much. So last Christmas I decided to go lunch with everyone on our last day of work and I was super careful with what I ate and only drank water. To cut a long story short I ended up in hospital 15 hours later, lesson learned I'm never doing it again.

[Big_H]

Just want to say you aren't alone and like you I wish my boyfriend would get that it controls everything I do and that I'm not exaggerating. I have become agoraphobic as a result of my IBS and few other symptoms of my fibro. It has affected my personal life as well. It is a horrible condition condition and it definitely knocks ones self esteem . I hope your work works with you. Maybe get some information or leaflets and give it to them so they can become better informed. Good luck: -)

[sweetsusie]

No need to suffer: Have your doctor prescribe any of these 3 meds for you: Welchol, Colestipol, and/or Questran. These are wonder drugs to stop diarrhea in its tracks. I don't know about your other symptoms, but I had chronic diarrhea for years and years and I now take 6 tablets of Colestipol per day....I now have my life back!

[Meg8103]

It really fluctuates there is no norm for me one week I’m constipated the next I’m too loose. Xx

[enter]

If you are suffering from IBS-D and would be interested to participate in the research study enteromed.co.uk/relieve-ibs...